Jump to content

My Hopsital Exp. Imuran-Mycophenolate/Cellcept... Lupus phnumenitis.
SERIOUS FATIGUE. Not coping. LACK of Family Support.

  • Please log in to reply
4 replies to this topic

#1 peaches2007

Posted 10 March 2012 - 01:21 PM

This post is kind of a combination of experiences/feelings I have been going through this last year...
would appreciate people to share their own experiences, coping techniques etc
I have had SLE lupus for 10 years. Tried all the meds from Plaq to Imuran with mostly negative side effects.
Last March I had a flare up while I was on Imuran.
From December to March I had an increasing inabillity of breathing. During this time I would lie on the couch at home all day with severe fatigue and would sleep up to 15 hours a day.
Finally, in the 3rd week of March it got so bad that Itried to walk to the top of our stairs to pack a bag for hospital that when I got to the top, I ended up laying there on the ground for 25 minutes recovering.
I was also having flash fevers... very bad ones of 41-42oc.
I WAS GASPING FOR AIR... I wwas so scared and felt terrible for my 4yo DD.
The frustrating part was during this time of feeling ill, my husband had accused me of 'Neglecting everything' and the night I rang him to come home from work early to take me to the hospital, continued to work for another 2 hours (at his own choice, he can leave when he wants to).
Anyway, makes you wonder who really cares??????
When I finally got to the hospital, I couldn't even speak 2 words without gasping for air. When they cheacked my Oxygen, I was only 87%... Anything below 95% requires immediate emergency care.
I was sent for an immediate MRI and what the results showed where horrible... all the fibres in my lungs were completely swollen.
The confusing part of it was that my blood tests for infection and my disease tests were both comming back negative.
I ended up getting an Endoscopy (one of the worst & most horrible experiences of my life!!!) and stayed in hospital fo 6 weeks received iv antibiotics even though infection test was negative and large daily doses of steroids (yay!)
The lung specialists and immunologists didnt know what to do with me as they could not diagnose.
Eventually, all they could suggest was that it may be lupus phnumenitis as a result of taking IMURAN.
Now, there are only a few ever recorded cases of this ever happening... but, I am one of those people that is usually a statistic/1 in a million cases)
They sent me home without an official diagnosis, left me on the imuran, increased steroids and I was back there with a fever and not breathing again 2 weeks later (oh well, at least I got to spend Easter at home!)
As I was officially under the care of the lung dept, and they had decided to leave me on the Imuran (even though that was probably the cause, get that?) I had to get my immunologist in there asap for an assesment.. He wanted to get me off the Imuran and try Mycophenolate.
I couldnt beleive the lung dept was trying to disagree!? My immunologist pushed his recomendations through and after I stopped taking the Imuran, my breathing eventually recovered and the fevers faded.
I have been on the Cellcept and prednisone for nearly a year now... I can breathe, but, I still feel like 'bleep'.
How can I be on all this medication and still be feeling like I should be in a hospital somewhere dying?
I am soo tired and grumpy. I just want to lie down all the time. This is not how I am.
We have had a family death and another is dying theres so much drama at my house I feel like I'm going to have a mental break down.. seriously.
My blood tests are fine, lupus not over active (but, of course they never are even when I'm dying)
Is my health state effecting my mental well being? I tried anti depresants, honestly... not my thing.. Yes, I found one that worked took it but I am still mentally and physically exhausted.
I know the lupus makes me tired and sick all the time, but.. it feels like it could be more. I snap at everything. It doesnt help that my 4yo dosnt listen to anything I ask her to do and is over the top messy...
I dont have much family support,  I do get what I'd call crumbs not often. And when ever I start to show slight recovery, all is quickly forgotten by others and the ol' horse has to put the cart back on straight away.
I feel neglected and pushed. Does anyone else often feel this way about those close to them?

Edited by peaches2007, 10 March 2012 - 01:31 PM.

#2 threelittlegems

Posted 10 March 2012 - 01:38 PM

OP, you experiences last year sound terrifying. Lying at the top of the stairs not being able to breathe thinking about your 4 year old....your post brings tears to my eyes.

What alarmed me about your post is that your husband didn't come home when you were desperately illl and needed him to. Did he apologise for this. Is he the person you are referring to as lack of family support, or your family in general?

#3 peaches2007

Posted 10 March 2012 - 01:56 PM

Yes, it was pretty scary.. initially I thought I had lung cancer. Thank Lord it wasn't!
Yes, I think it is just him that I have these feelings about. The rest of my immediate family are 4+ hours drive away. He seems to always be ignorant to the fact just how ill I really am. Whats weird is he can have a few tears about my illness every now and then but tears wont help me.
Firstly, his reson for not paying attention for the last 8 years was his brother was murdered, now its because he lost his mum 5 months ago... and his dad is in hospital dying.
So he pretty much some days I feel has a valid reason for not giving me the emotional support I need, but he is one of 6 and up until recently was the only one doing all the work involved for his mum & dad. He must feel terrible having sick people all around, but I feel like I am not getting the support I need from his as a husband.
How can you  say express in a nice way that your needs are not being met (without getting into an argument) with someone who is greiving?
I have been with him, supported him emotionally, looked after his parents when his own family would not all while I was sick. It just feels really unfair and I feel miserable alot of the time now. I even wake up thinking 'where is all this going'...
So sorry for these rants, this is just the only place I could think to come to... or an expensive shrink!! wink.gif

#4 FeralMinx

Posted 07 April 2012 - 12:14 PM

I can relate to many things you are saying.  I am doing much better now but in my younger years had chronic fatigue syndrome, spondylo arthorisis syndrome, endomitriosis/other cycle problems chronic back pain, chronic sciatica AND depression/bipolar/anxiety all together.  Fun times.

It started at puberty, so my first support network was my parents.  A few trys they gave, at being supportive, but I so relate to the attitude of 'neglecting everything' and 'get the cart back on, you've had 1 good day already'... etc.  Secondly it was my now ex husband.  Same deal.  Understanding in conversation at times, but in reality, just unsupportive and making matters worse (felt like kicking me when I was down) and making me feel more isolated and burdened than I would have done if single...

I relate.  But I don't have the answers.  If your DH will not become a reliable ally for you in your struggles, you would be much better off without him.  AND you would get more down-time as he would have your DD in his care a % of the time, and he wouldn't be able to expect you to put that cart on... he'd have to deal with it himself, and you could choose your own level of dealing with your own life.  At the same time, I know thats not what you are here to hear.

#5 whydoibother

Posted 08 April 2012 - 04:10 PM

Have they checked for embolii?  You sound like I was except i had PEs and effusions which have left me with plueral thickening.

I have SLE and I am on plaquenil, celebrex, warfarin, somac, panadol osteo/panadeine forte, and now methotrexate.  I thought that cellcept was for severe renal involvement?

My kidneys are fine.  I get bad joint pain and soft tissue swelling.  My lungs haven't flared up for about a year now (touch wood!).  
I am hoping the methotrexate will start to help me with the joint pain, the soft tissue I just have to keep walking etc

Imuran caused my aunty in law to have a bad reaction-she almost died (she has crohns disease).

Can they put you on methotrexate or sulfsalasine (spelling) instead with plaquenil?

My husband understands now.  It helps his Dad has ankolysing spondylitis and rheumatoid arthritis so he has some understanding of the pain.  My house is never perfect but my kids are fed, washed and wear clean clothes.

I find exercise in the form of walking helps and also breathing exercises help the lungs recover.  
Fatigue is always there for me in some sense but I do feel better than i did a year ago and I have only been on the DMARDS for about 8 months.

My family is in NSW I am in WA.  

Would your husband be willing to read some info about lupus?  I can try and find a link to a print out for partners and family members?

ehere is a helpful link about living with lupus:



Edited by IAmCal, 08 April 2012 - 04:13 PM.

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users


9 things I need to thank my parents for

You really don't realise everything your parents did for you until you find yourself doing them for your own children ... vomit catching and all.

The adventurous baby who's already putting safety first

When you're a baby, even getting off a bed and onto the floor can be a tricky procedure.

The story behind the love video that went viral

It is a quiet video, less than a half-minute long. It features no flourishes to speak of. It has no kittens doing kitten things. None of the things that often make a video go viral.

Anthony and Elle Watmough's joyous news as baby cleared of fatal condition

Rugby league star Anthony Watmough and his wife Elle have shared their joy at learning their unborn baby, who was thought to have Trisomy 18, was cleared of the fatal condition.

Win a family farmstay with Shaun the Sheep

To celebrate the Home Entertainment release of Shaun the Sheep Movie, Essential Kids and Universal Sony Pictures Home Entertainment are offering one winner and their family a holiday to a farm.

How I learnt to be a better friend

I may have lost that particular friend years ago, but I have gained so much from that experience.

What goes in the nappy bag?

It's far more than just a bag for nappies - it's the travel companion for your baby that should contain all the things you might need when away from home base.

The nature naming trend

The biggest joy of our daughter's name is that people really light up when they hear it (pun intended).

Win a Justine Clarke Pyjama Jam! prize pack

The Pyjama Jam! tour will see Justine Clarke returning to more intimate venues around Australia, creating the perfect comfy and cozy atmosphere for a PJ party.

Parents of baby born without part of his skull stand up to critics

When Brittany and Brandon Buell's son Jaxon was born missing much of his brain and skull, doctors said he only had days to live.

Baby plans are 'none of your business'

Emily Bingham had been asked about her baby making plans one too many times. 

Diet shakes to lose weight? Think again

Thinking of investing in meal replacement shakes to slim down ahead of summer?

Study offers support for cancer treatment during pregnancy

It is among the most delicate and difficult dilemmas in medicine: Should a pregnant woman who has received a cancer diagnosis begin treatment before her child is born?

Awards 2015: Vote now for a chance to win $2000

Vote for your favourite pregnancy, baby and toddler products for your chance to win your share of $2500 in cash prizes.

64 baby names based in nature

Looking for a baby name with a nod to nature, or one with an organic meaning? Check out our list to get inspired.

What coffee does to your body

That cup of Joe is just the boost your body needs.

Mum leaves triplets at hospital because she can't afford them

An illiterate and poverty stricken mother has abandoned her newborn triplets at hospital because she cannot afford to care for them.

I gave my daughter up for adoption - then tried to be her mum

The first time my oldest daughter called me 'Mum', she was 17.

Rainbow Babies lighting up the internet

A recent Facebook photo post is prompting widespread discussion of an emotional topic for many parents: rainbow babies.

The new wave of virgins giving birth

Dozens of young women have had virgin births after undergoing IVF in Britain, it has been reported.

'It sort of became an addiction': parents buying, reselling Bonds Wondersuits

Your baby might be crawling around in hundreds of dollars worth of clothing.

Adjusting your child to daylight savings time

A one-hour difference to the day is pretty big deal when you're little.

Born too soon: life on the margins of existence

The frontiers of life are advancing ever further into uncharted territory.


What's hot on EB

Stella McCartney honours mum with lacy bra

Fashion designer Stella McCartney has honoured her late mum, Linda McCartney, by designing a special bra for post-mastectomy patients.

Don't panic: A granddad midwife's guide for dads-to-be

Mark Harris has helped deliver 500 babies. And he's now telling fathers what to expect.

How to be a calm parent when you're feeling anything but

Being a calm parent takes a lot of work, sometimes more than is obvious to those around us.

The joy and isolation of being a stay-at-home dad

It's cool, kind of like a second childhood. I love him to bits and think, on average, I'm an okay dad. But I also want to talk about the other stuff.

How baby Teddy's short life is helping save thousands of lives

He may have only lived for 100 minutes, but that didn't stop baby Teddy from saving the lives of others.

A heartbreaking trail of missed chances in death of baby forgotten in car

A haunting reminder to stay mindful about babies in cars, especially as we approach summer.

What to do if your baby has tongue-tie

Tongue-tie can cause feeding problems. However once it is diagnosed, the condition can be easily treated.

How to move house without losing your mind

Some people move frequently, while others like to stay put. But everyone finds it stressful.

'She had nowhere to go': how new mum's life began to unravel

The birth of her first child should have been happiest of times for Campsie mother Phuong Cao, but friends say it marked the beginning of when her life began to unravel. 

Women giving birth to a son keep some of his Y chromosomes

It was an experiment doomed to failure - they were looking for male cells in female bodies. And their search was stunningly successful.

Photos: How babies fit in the womb

A gorgeous photo series shows babies in the first hours after their birth - as they were positioned in the womb.

Baby tries to persuade stubborn bulldog to walk, fails

We don't know what he's saying, but this baby has a very clear message for his bulldog pal: let's walk - NOW.

The best toddler gift ever? Nine gender-neutral play kitchen picks

Without a doubt, one of the best gifts for a toddler turning two or three is a play kitchen.

9 easy steps to improve your baby photography

With a few simple tips you can take your images from random happy snaps to lovely clean images that create beautiful lasting memories.



What are your favourite baby products?

The Essential Baby Awards are on now, and we need your help! Have your say on your top picks and you'll go in the draw to win a share of $2500.

Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.